Heart Disease, Advance Care Planning

Unpredictable Trajectory and Other Care “Dilemmas” in Heart Failure Make End-of-Life Care Planning Imperative

October 7, 2015

Red heard placed next to stethoscope

The uncertain and unpredictable disease trajectory of heart failure (HF) poses an obstacle to ensuring better quality end-of-life care for patients with end-stage disease, as do other patient, clinician and policymaker “dilemmas” in the care of these patients, according to a paper published in the Journal of Geriatric Cardiology.

“End-of-life care encompasses not only symptom management, but also includes hospice care, advance directives and advance care planning,” write the authors. “Consequently, end-of-life care is now ‘mainstream’ and an integral part of the process of HF care.” But discussion of patient wishes for end-of-life care must begin early.

The authors of the paper, who conducted a literature review on care dilemmas in end-stage HF, note that a recent task force of the American College of Physicians found early discussion between patients and their clinicians “was not only cost effective (with reduced utilization of futile non-beneficial medical care at the end of life), but more importantly, resulted in better quality of life and positive family outcomes.”

Compelling Facts about HF

  • As a “major global health issue,” HF has a prevalence in the U.S. estimated at 6.6 million patients in 2010, with a projected increase to 9.6 million by 2030.
  • U.S. deaths attributed annually to HF exceed the number of deaths due to lung cancer, breast cancer, prostate cancer and HIV/AIDS combined.
  • An estimated 50% of HF patients die within five years of diagnosis.
  • While nearly 50% of hospice patients have cancer as a primary diagnosis, only 12.2% are enrolled with cardiac disease as a primary diagnosis. “Many patients, their caregivers and clinicians fail to recognize the terminal, progressive nature of HF,” write the authors.
  • HF costs the U.S. billions of dollars per year in services, medications and lost productivity. This cost is projected to increase from $44.6 billion in 2015 to $97 billion by 2030, causing grave concern among policy makers and other healthcare resource stakeholders.

HF is also a leading medical cause of hospitalizations among patients aged 65 years and older. Thirty-day readmission rates are high, with HF being the most frequent diagnosis for hospital readmission. One-year mortality rates for Medicare beneficiaries hospitalized with HF decreased only slightly from 1998 to 2008, remaining at about 30%. However, for those HF patients with multiple comorbidities, one-year mortality following hospitalization may be as high as 60%.

“Thus, the initial hospitalization for HF should alert providers to initiate end-of-life care planning, if not already started,” observe the authors. “These HF hospitalizations and frequent readmissions with early mortality should be a harbinger to patients, caregivers and providers about the need for end-of-life care planning.”

Hindrances to EOL Care

“One of the most prominent dilemmas at the end of life in HF is presented by poor or ineffective communication between patients/caregivers and their clinical providers,” observe the authors. This can be exacerbated by:

  • Patients’ limited understanding of the terminal nature of their disease and physicians’ reluctance to raise the topic of death
  • Discomfort (for both parties) in addressing the terminal, progressive nature of the disease
  • Lack of sufficient physician training in discussing end-of-life issues
  • Difficulty in discerning the proper timing for end-of-life planning and when to refer patients to palliative care

Another obstacle to end-of-life care planning for HF patients is the uncertain trajectory of the disease. The authors note that clinicians often find it difficult to determine when to refer patients to palliative care and/or hospice because HF is characterized by unpredictable decompensations and improvements.

The disease’s unpredictable course “may also lead patients and caregivers to have unrealistic expectations that, having survived and recovered from an episode of HF exacerbation, they see no reason why they should not recover again from future episodes.”

Thus, the difficulty in prognostication “makes it even more important to discuss palliative care and end-of-life care early in the disease process,” the authors write. “[A]ll HF patients would benefit from early referral to palliative care but lack of awareness and understanding by both patients/caregivers and clinicians limit utilization of this much-needed resource in HF management.”

Improving EOL Care

The authors suggest that the clinician meet with the patient to discuss the patient’s wishes and to set realistic expectations at the initial meeting or at diagnosis, and then revisit such wishes and goals of care at regular intervals, especially when there is a change in the patient’s clinical status.

The authors also note that early involvement of the palliative care/ hospice multidisciplinary team is crucial for developing trust between the patient and the team members, as well as for facilitating timely interventions to assist patients and caregivers.

Patient consultations with other team members are an essential part of holistic end-of-life care that “may ease the personal discomfort that many physicians feel when faced with the situation of "‘giving up the fight.’”

“In the meantime, HF prevalence continues to grow and patients, their caregivers and clinicians must become more educated and proactive in navigation of end-of-life care, in order to minimize the patient’s fears and suffering as death becomes imminent,” conclude the authors.

Source: “Dilemmas in End-Stage HF,” Journal of Geriatric Cardiology; January 2015; 12(1):57-65. Chen-Scarabelli C, Saravolatz L, Hirsh B, Agrawal P, Scarabelli TM; Veterans Affairs Healthcare System Ann Arbor, Ann Arbor, Michigan; St. John Hospital and Medical Center/Wayne State University, Detroit.

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